Life

The Pennsylvania civil-rights story you were never told

by By Samantha Melamed, Staff Writer, Posted: April 6, 2016

Audrey "Dee" Coccia had to fight just to get her daughter Gina into public school in the 1970s. And then, after Gina was finally enrolled at age 11, Coccia had to fight for basics, like speech therapy.

"They told me my daughter would never benefit from services, so why would they give them to her?" said Coccia, of Philadelphia's Somerton section.

"Some of us have fought a long time," she said. "In the beginning, you either went to a state institution or you stayed home and had nothing. So we fought desperately for education and the right for self-advocacy, and to get people out of the state centers. But a lot of the young families today are not aware that that was our struggle."

Now, a yearlong arts and engagement initiative - comprising a play, a photo exhibition, storytelling events, and panel discussions - aims to bring that story to light. To Coccia and others in Pennsylvania's intellectual disabilities rights movement, it ranks among the major civil rights battles of the 20th century.

The project, "A Fierce Kind of Love," was produced by Temple University's Institute on Disabilities, which has been working to preserve the history of the movement.

"Pennsylvania has a unique role in this civil rights story," said Lisa Sonneborn, the project's producer. "We were the first state to open our schools to kids with disabilities, we were one of the first states to embark on a journey of deinstitutionalization. But the people who made that history were getting older, and we were losing them and losing their stories."

Five years ago, Temple hired Sonneborn to collect oral histories of activists and families. Now that their stories - more than 60 of them - have been preserved, the challenge was how to use them to energize future activists.

That, Sonneborn hopes, is where the arts come in.

"Here," an exhibition of photos and audio interviews at Philadelphia City Hall through May 6, tells the story of people still living and working in segregated settings. At storytelling events this month, parents, siblings, and people with disabilities will speak for themselves. And an original play, also called A Fierce Kind of Love, premiering Thursday, tells the story of the movement from 1968 to the present day.

The play draws on talent with serious theater credentials: the playwright is Suli Holum, a Pig Iron Theatre cofounder; the director is David Bradley, a People's Light company member. The cast, though, is half professional actors and half theater newcomers who have intellectual disabilities.

The casting decisions were made after Bradley and Holum met with activists.

"What hit us was, to tell this story of the expansion of rights and the goal of an inclusive society," Bradley said, "we needed a cast that embodied that."

He opened a rehearsal last month by running through the opening scene. In it, each actor mentions something he or she loves.

"The intention is: You are a person who loves," he told them. "Every one of us is a person who loves. That's what that section of the play is about."

It seems like a basic notion - but, for disability-rights activists, even something as simple as personhood can't be taken for granted. The play includes a rap with the refrain "person, person - human being!" and a song about a nonverbal girl accompanied by an interpretive dance by Erin McNulty, one of the nonprofessional actors.

The play also tells the stories of people, like Coccia, who powered the movement in Pennsylvania.

There are parents such as Dennis Hagerty, who posed as a doctor to go undercover at Pennhurst State School and Hospital to see what his son would experience there.

And there's Bill Baldini, the NBC10 reporter who exposed the conditions at Pennhurst, showing people with intellectual disabilities strapped to beds or in cages, emaciated.

"All they want to do is touch you. If you hug them, they cry," he tells his editor in the play. "What you can't show on TV is the smell."

The actors at times embody characters and, in other cases, draw on their own experiences.

In a scene from the '60s, a character uses the word retarded, and modern-day Shawn Aleong jumps in to correct him.

Aleong, 28, of Wynnefield, is a rights activist who has an intellectual disability, but who had been unaware of much of the history.

"It was hard to hear some of the stories people like me went through," he said. "One time, when we did research, I got upset, and I didn't understand at the time why. We were not treated as equals. But working on this play really educated me about the disability movement and how to be a better advocate."

With its mix of monologues, vignettes, music, and dance, the play is designed to reach audience members of all abilities.

"Often, theaters will designate a particular performance as sensory-friendly or accessible," Sonneborn said. "All of our performances are accessible."

Likewise, she promised, the play is accessible to those without any connection to the movement. The goal is to enlist new allies.

To that end, for "Here," the exhibit at City Hall, she invited community volunteers to do interviews with residents of an institution, or workers at a sheltered workshop. Photographer Jacques-Jean Tiziou documented each interview and shot portraits.

It was a daunting process, said Sonneborn.

"A lot of the people were not traditional communicators," she said, so scripts had to be discarded. "Just letting them tell their stories in whatever way they wanted became kind of a radical act."

Shooting the portraits wasn't simple, either. In the end, Tiziou snapped photos, but he also handed over a remote so subjects could make self-portraits.

He thinks this work puts a face on a battle that's outside the public view but by no means over. (The next fight: the 13,000-person-long waiting list for community-based services in Pennsylvania.)

"To engage these issues," Tiziou said, "you need to first let people know these places exist and who these people are. It's, instead of talking in the abstract about people with disabilities, to talk about Frank and Edith and Norma as people with stories and preferences and needs. That's what this project invites people to consider."

For an events calendar, go to temple.edu/instituteondisabilities/voices/afkol/